Gemma remembers staring at her hands, clenched so hard that her nails were drawing blood. She remembers trying very hard to breathe, as though her throat was collapsing. She remembers the feeling of seeing the world—the familiar surroundings of her doctor’s office—through bubble wrap. Now and again, it felt as though a bubble popped, and all her emotions rushed in at once, in loud surround sound. She just wanted it to stop.
“Have you made a plan to take your life?” asked her doctor, and she nodded.
This wasn’t news. In the months leading up to this moment, she’d seen him regularly, seeking help for suicidal thoughts, low mood, anxiety and an eating disorder.
At 30, Gemma had experienced years of mental illness. She had felt this way before. But this was the first time she had come so close to making that decision.
She told her doctor about her suicide plan, and he called a crisis-assessment team at the local hospital. Then he walked her to her therapist’s office to wait for them.
It seemed to take forever for the crisis team to arrive. The two assessors, a man and a woman, talked to Gemma’s doctor and therapist before they sat down to interview her. She was asked to explain every part of her life, from things that had taken place in her childhood through to her current thoughts. The interview went on and on. She remembers feeling surprised, then shocked.
“I thought they would be ready and willing to lock me up and throw away the key,” she says. “But they didn’t want to admit me.”
Her doctor and her therapist argued her case, and finally it was agreed that Gemma would be admitted to the mental health unit at the local hospital.
The crisis team drove her there. She was terrified, wondering if she’d made the right decision. Someone told her to call a friend to bring her clothing and medication, and her bags were searched to make sure she didn’t have anything she could use to harm herself. Her medication was handed over to a nurse to be given at prescribed times.
“I realised what I had done was sign over my autonomy,” she says. “I’d had to admit I couldn’t be trusted with my own safety, so that meant someone else would be. It was really hard to give up that control.”
At the hospital, she had her own room—something she hadn’t expected—which contained a single bed under a window, overlooking a small square of bark and some sad-looking trees. There was a wardrobe, a desk and a nightstand next to the bed, with enough space for a book and a glass of water. A folded towel and facecloth sat on the desk.
“It felt like checking into a hotel,” she says. “If there was such a thing as a hotel for clinically depressed people.”
It’s been a year since Gemma’s admission to hospital, and now she understands more about what she went through.
“I had temporary psychosis,” she says. “I was trying to switch antidepressants, and I ended up suffering withdrawal from one medication, Venlafaxine, which is known for this exact thing. It’s really hard to come off. My brain was trying to cope with chemical changes and it got derailed.”
We still don’t know much about brains undergoing depression, or what happens when people take antidepressant medication, but there are a number of theories.
One holds that the neurotransmitters which connect nerve cells don’t work properly. Some research has linked the development of depression to misbehaving neurotransmitters such as serotonin, dopamine, norepinephrine, and, more recently, glutamate. This is called the neurochemical hypothesis, and it’s why some people describe depression as a chemical imbalance. Then there’s the electrophysiology hypothesis, or the idea that the brain’s electrical impulses are abnormal. Neither of these ideas has been proved conclusively. It could be that neither is true or that both are.
What is more certain is that mental illness is happening to a lot of us. In 2017, one in five New Zealanders sought help for a diagnosed mood or anxiety disorder—and this statistic doesn’t include people who feel depressed or anxious and go untreated. Mental illness is now the third-highest cause of health loss in New Zealand, creating a duty of care the public health system has yet to catch up with.
Ministry of Health figures show a steady increase in diagnoses of depression and anxiety. In 2007, 10.4 per cent of people had received a diagnosis of depression at some point in their lives, which grew to 15.5 per cent in 2015 and 16.7 per cent in 2017. The same is true for mood and anxiety disorders—19.9 per cent of people in 2017 had been diagnosed with one, compared to 12.7 per cent in 2007.
In 2018, ‘anxious depression’ will be included in the World Health Organization’s International Classification of Diseases for the first time, meaning the two will no longer be treated as separate conditions.
“This helps to highlight that anxiety symptoms can be just as distressing and disabling as the symptoms of depression,” says Tony Dowell, who is a professor of primary health care at the University of Otago, and a general practitioner.
While the symptoms of anxiety and depression can make life challenging, painful, and lonely, mental illness and its causes remain largely invisible, meaning diagnosis can be difficult and complex. If we could do a brain scan and identify depression, for example, we’d save time, money, and lives.
“Defining a mental illness in the brain is the billion-dollar answer we’re all looking for,” says Neil McNaughton, a neuroscientist at the University of Otago.
He’s been working on this for more than 50 years, most recently making progress towards identifying a ‘biomarker’ for anxiety. His Dunedin lab has pinpointed a particular brainwave, or signal, which appears to be reduced by medication.
“We have a test which we believe is a measure of one anxiety-related process,” he says. “The question we’ve been asking for the past three years of work is whether that measure is high in people with some sort of anxiety disorder.”
McNaughton’s previous research showed that the hippocampus, a part of the brain which is widely thought to control memory, may also be key to controlling anxiety: “What I think we are dealing with is a mechanism that essentially can keep defensive, fearful, anxious memories going.”
I picture a rabbit in a field, constantly on edge, always on the lookout. It appears the hippocampus may be responsible for the need to be prepared for danger—for the feeling of being under threat, even when there
McNaughton describes his work as “one little window into the brain”, telling me we’re still a long way off being able to diagnose specific disorders this way.
This is a fledgling science, and it’s early days. Being able to easily identify what’s happening in the brain of someone with mental illness would remove part of the struggle.
Robin spent a childhood being “trucked through” counsellors and psychiatrists.
“I had a slew of diagnoses and therapies before I was even an adult, but they effectively did nothing. I didn’t start seeking my own help until I was 18, when things got a lot worse.”
While at university, Robin was prescribed an antidepressant, but it didn’t do its job.
“Three years and four antidepressants later, I was referred to the university’s internal psychiatrist, who finally diagnosed me with bipolar type two, and got me on the right medication.”
Other researchers are investigating tiny changes in volume in different organs of the brain, using functional magnetic resonance imaging, or fMRI. When an area of the brain is active, blood flow and oxygen levels increase. Oxygenated blood has different magnetic properties from normal blood, meaning it can be ‘photographed’.
Changes between fMRI scans are too slight for human eyes to see, but computers can measure variations in volume.
Checking the volume of the hippocampus, for instance, is one way to see if something is awry. So far, research shows it is smaller in people with depression.
Meanwhile, activity in the amygdala, which is the main organ responsible for the fight-or-flight response, is generally higher when a person is clinically depressed. The amygdala is associated with conditioned fear, and some studies have linked its activity to expressions of post-traumatic stress disorder.
“It’s not as simple as being able to identify specific areas of the brain that are affected,” says Frederick Sundram, a North Shore Hospital psychiatrist and a senior lecturer at the University of Auckland. He’s at pains to tell me how complicated it is: “There is definitely a genetic component to it.”
And there’s a social component, too. People living in the most socioeconomically deprived areas of the country are nearly three times more likely to experience psychological distresses as those living in the least deprived areas, according to the 2016–2017 New Zealand Health Survey.
Brain-imaging research promises more answers about the physical origins—and treatment—of mental illness, but it’s only just getting started, says University of Auckland neuropsychopharmacology researcher Suresh Muthukumaraswamy, who studies how drugs alter brain activity.
“Physics is about 500 years old,” he says, “whereas we are about 25 years in.”
Gemma can remember having depressive thoughts and anxiety as early as age six. At seven, following her parents’ divorce, her hair began to fall out from stress, and at eight, she began arranging and rearranging the world around her.
“I remember being really afraid,” she says.
“And I started needing to have things a certain way, to feel some control. I’d move furniture around when no one was home. I refused certain foods. I needed to have an exact number of blankets on my bed in an exact order, otherwise I couldn’t sleep.”
She saw her first counsellor at nine, or maybe earlier—she can’t quite remember. As she was growing up, her family discouraged her from taking antidepressants, and it was only when she ended up in hospital at 18 after self-harming that she first tried medication. It felt like giving in.
“It wasn’t giving in at all—it was the opposite,” she says. “I wish I’d done it earlier.”
Since then, she has been diagnosed with major depressive disorder, generalised anxiety disorder, post-traumatic stress disorder, and obsessive-compulsive disorder. Although she tried numerous medications that helped, she never found one that worked as well as she’d hoped.
In 2017, a new psychiatrist looked at her history and suggested tapering off one medication and increasing another. He was convinced the switch would do the trick, and his optimism was infectious.
But the change had the opposite effect: “My anxiety got out of control, I just felt terrified of nothing, all the time. I was constantly nauseated and dizzy.”
She suffered brain shocks, where moving her head too fast made her feel as though her brain was shuddering inside her skull. She started harming herself again. Her problems seemed too huge, her emotions overwhelming. Her depression sapped the colour out of everything.
“I made plans for removing myself from the world,” she says. “I wrote a will.”
Then came the day when, standing on the side of a road, Gemma stepped into oncoming traffic. It was as though she was watching herself from outside her body—but she snapped back just in time and got out of the way. That’s when she knew she had to hand her life over to the care of someone else.
“I couldn’t connect emotionally with the consequences of my actions,” she says. “I realised my grasp on the world was failing.”
Few people have a picture of what intensive care involves for people in mental distress—even Gemma, despite her long experience with the public mental health system, didn’t know what would happen to her. She was surprised to be given her own room in the hospital—she’d been picturing a row of beds in an open ward, and an institution ready to lock the door behind her.
In reality, the public health system wants to make sure that people don’t acclimatise to a closed environment. The early 1990s saw a period of mass deinstitutionalisation in an attempt to prevent patients becoming dependent on the structures inside facilities and being unable to re-enter society. (Studies show that institutionalisation can happen in as little as two weeks.)
Nelson’s psychiatric hospital, Ngawhatu, which had been in operation since 1922 and at its peak housed 800 people, closed during that time. The site where it stood is still empty, and the asylum has become part of local legend. Sometimes patients slept on mattresses on the floor due to overcrowding, and there were open showers and baths. Understaffing was an issue, with as few as four nurses to each of the 13 villas, which held 40 to 60 people each.
“Staff did not think they [the patients] needed much privacy,” says Nathan Davis, who worked at Ngawhatu in the 1990s. “They were there for treatment, not for homely living.”
Most people’s depression and anxiety can be treated while they remain living at home, so the shift from hospital to community-based services made sense. But it doesn’t work for everyone.
Intensive care takes the form of live-in respite houses and residential programmes—both of which are alternatives to mental health units in public hospitals.
To see what this kind of care looks like, I visit Kotuku, a respite house run by a non-profit organisation in rural Tasman. A repurposed villa transported from Nelson, Kotuku sits in the middle of an olive grove, backdropped by the peak of Mount Arthur. It was created to provide guests with a home-like environment that spares them the stressors of daily life.
People often arrive feeling quite distressed, says Kotuku team leader Robyne Coleman, but after a couple of days, the change can be remarkable: “I’ve met someone, and come back three days later and barely recognised them. That’s how much it can change people.”
The house has four guest rooms, and hosts 20 to 30 people every month. Guests stay for up to two weeks. It’s funded by the Nelson Marlborough District Health Board, and staffed exclusively by people who have experienced mental illness.
Kate, who has worked at Kotuku for eight years, says it is the best job she’s ever had.
“I consider it a paid privilege. Working here is really cathartic. I’ve had my own journey, sometimes rocky. Guests allow you to enter their lives, to whatever degree. They’re from all walks of life, with all manner of reasons to be here.”
People relax because they’re around others who understand, says Coleman, and the possibility of recovery surrounds each guest—demonstrated, each day, by staff.
“You’re always self-conscious when you have a mental illness, but at Kotuku there’s a lack of stigma because everyone around you knows what it is like. You can talk to people on a real level.”
The next morning, Gemma woke up in a fog. She was afraid to leave her room, and wanted to be left alone. But that went against the prevailing wisdom about what’s good for mental health, and the staff encouraged her to visit the dining room, to go out in the garden.
“One nurse came in and said to me, ‘You’ve got to move about and get some sun. I’d go mental if I stayed in here all day’. It made me laugh, because it was so inappropriate.”
On her fifth day in the unit, Gemma gave into pressure from clinical staff, and took day leave. She didn’t want to go—she was afraid she wouldn’t be able to cope, afraid she’d do something to hurt herself, afraid they wouldn’t let her back in.
A friend picked her up and they went into town. Everything felt too bright, too real.
“I was convinced that, at any moment, someone was going to yell, ‘Escaped psychiatric patient!’ and tackle me,” she says.
She was relieved to arrive back at the unit, where she didn’t have to pretend to be okay.
Most of the patients in the unit seemed to understand Gemma didn’t want to talk, but others didn’t get it, or didn’t care.
“They wanted to know my name, where I came from, why I was there,” she says. “I ended up talking to one woman while I was in the art room, doing one of those adult colouring-in books to pass the time.”
The woman wanted to visit her baby, who was six weeks old, but unlike Gemma, wasn’t allowed to go on leave—not until she could prove she wasn’t going to run away.
When short-term respite care isn’t enough, more intensive residential programmes play a vital role.
Te Whare Mahana, which means ‘the warm house’, used to be the home of nuns, and it still has an air of calm silence—at least today. A converted villa in the heart of Golden Bay, backing onto farmland, it’s the only place in New Zealand to offer a 12-month residential recovery programme using a technique called dialectical behaviour therapy (DBT).
The house lives up to its name—the lounge is filled with overstuffed chairs, and the kitchen features a large table where residents and staff eat together each night. One room is dedicated to helping residents soothe themselves when they feel distressed, and has puzzles, a stereo, and weighted blankets, which are designed to be calming.
There are up to seven residents at a time, who help to run the household—cooking, cleaning, and eating together—so that they can rejoin everyday life after their stay.
Many residents struggle with relationships, and interacting with others in the house is a chance to practise the DBT skills they’re learning: mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness. DBT was developed in the 1980s to assist people with borderline personality disorder, but has since been shown by research to aid other mood disorders as well.
Once residents develop mindfulness, which helps them recognise they are separate from their emotions, they’re able to learn life skills, such as how to approach negative situations calmly, ask for what they need, say no, and manage intense feelings. People move through five levels as they learn and use each new skill. For many, this therapy is their last lifeline.
Charlotte has been living at Te Whare Mahana for six months when I visit. The 21-year-old has been in hospital many times, and received 44 treatments of electroconvulsive therapy, beginning when she was a teenager. Her arms, covered in raised scars from self-harm, are folded hard over her stomach. She doesn’t look at me, and her left leg shakes uncontrollably. In a whisper, she says she’s terrified to talk to me—I have to lean in close—but she wants to tell others who are suffering that there’s always hope.
Charlotte reels off every antidepressant, antipsychotic, mood stabiliser, and tranquilliser she’s been treated with. It’s a long list—she had been labelled ‘treatment resistant’, a term for anyone who doesn’t respond to two or more antidepressant medications. She’s had cognitive behavioural therapy, creative therapy, mood management, and treatment for eating disorders. The programme at Te Whare Mahana is the first thing that has worked for her.
“It’s the best and hardest thing I’ve done.”
I ask her to tell me about the tattoos that wind around her arms and legs. A koi fish represents courage and aspiration to greatness, swallows show freedom, and a group of mandalas on her bicep are “about family, and journeying towards better things”. The anchor, she says, she got following a failed suicide attempt.
“It’s about staying grounded. To get better, you need to stay alive.”
There are a handful of places like Kotuku and Te Whare Mahana around the country, but they’re not widely advertised. Many are funded, at least partially, by district health board contracts, but the money doesn’t go far. That means spaces are limited, and there’s not always an easy intersection or progression between what may be available in the public health system and options such as respite care, residential care, rehabilitation, or other community-based services and organisations.
Not only are the treatment options unclear, but, despite many public awareness campaigns, not everyone knows how depression and anxiety feel, when they are ill, or where they should go for help.
Jane was 17, and had just left home to start university, when she started having moments when she couldn’t breathe. Her mouth would become dry, and her limbs would feel weak, as though she’d just run a marathon. She didn’t know what to do. She was intensely worried, and thought she might be dying. Instead, she was having panic attacks.
She visited her local hospital’s emergency department a few times, but the attacks continued. Eventually, she saw a GP, who diagnosed her with depression and anxiety and prescribed her some medication.
That was more than a decade ago, and Jane is now in her mid-30s, but the fact that people can visit a GP for mental health concerns is still not widely known. David, who is 31, says he didn’t realise until recently that he could take questions about his mental health to a doctor—who might then direct him onwards to specialists or other care.
“I didn’t even really know what I was asking about, as such,” he says. “My father has depression, so I sort of knew it was a possibility for me. But I didn’t know if what I was feeling—a bad day here and there—was ‘normal sad’, or something more.”
David hadn’t been to a doctor in years—“and we, especially men, say that almost like a badge of pride, don’t we?”—so he didn’t have an existing relationship with a GP.
“The stigma of mental health is playing a part—the idea that you should just have enough willpower to make yourself better. There’s no stigma around having a broken bone and seeking medical advice, so there shouldn’t be any around something that’s in your brain.”
He told me he was surprised to learn that taking an antidepressant might not be a lifelong thing, or that medication wouldn’t be the first, or only, form of therapy offered by a GP.
Aaron Carey, who works at Connect, a mental health support organisation in Auckland and the Waikato, says depression has been labelled the common cold of mental illness.
“Everyone knows what to do if you have a cold—everyone should know what to do if you might have depression.”
Masters student Alice Stevenson, who is studying psychotherapy, says people she has interviewed did not understand what talk therapies were, let alone the differences between them or how they could benefit. “They’ve said to me, ‘So it’s not just lying on a couch? It’s not someone who’s going to handcuff me and take me away?’
“Evidence shows that psychotherapy is as effective, if not more, than antidepressants for treating mild to moderate depression. But antidepressants are cheap, and talk therapy isn’t. Medication is like a ‘hope prescription’ for many people.”
Tom Levien, a consultant psychiatrist, works in the middle ground between GPs and emergency care. He often sees ‘treatment-resistant’ patients, such as Charlotte, who haven’t responded to two or more antidepressants.
“It’s hard to say why sometimes one drug doesn’t work but another one [of the same class] does,” says Levien. “And how do you classify if it has worked? Some clinicians and patients would call a 50 per cent reduction in symptoms a success, others are looking for more.”
Richard Tranter, an outpatient consultant psychiatrist, says the sector has “yet to move beyond a set of treatments that were discovered sort of accidentally, early on”. He’s referring to the fact that many antidepressants were developed serendipitously from other medications, when mood enhancement was discovered as a side effect.
The longest and largest study ever conducted to evaluate depression treatment—the Sequenced Treatment Alternatives to Relieve Depression trial conducted in the United States in 2001—showed that about a third of people achieve remission with the first antidepressant they try.
The study, which followed 4041 patients over a 12-month period, involved four treatment levels. If patients failed to achieve remission, which was defined as a 50 per cent reduction in symptoms after 12 to 14 weeks, they were encouraged to move to the next treatment option. But not everyone understands their first medication might not work for them.
“GPs don’t have enough time to explain side effects and how to manage them,” says Levien. “This means a lot of people stop taking their medication in the first few weeks because they don’t think it’s working, or they don’t know how to manage the side effects, and that they will probably eventually ease.”
Stopping or changing medications without help can increase the risk of withdrawal, but many people I spoke to never received an explanation or offer of ongoing support from their GP.
Jane, who had been suffering panic attacks, was prescribed a month’s worth of the antidepressant Aropax while at university.
“I didn’t have any information about what it was, how it works in the brain, how it might make me feel or what the risks were. I was just given the script and sent on my way.
“Because I was a teenager it didn’t occur me to research the side effects. And I didn’t have the confidence to ask questions or ask for talk therapy. To me, the doctor was in a position of overwhelming authority.
“When a doctor says, ‘Let’s increase the dose, let’s try something else’, if you don’t have the resilience, you feel like you’re at the end of the line. That’s a very easy path for a depressed brain to take.”
On the seventh day of Gemma’s stay in the mental health unit, she was discharged on leave. That meant she could return home for two days, but she had to report to a psychiatrist on the third day so they could assess if she needed to be readmitted.
Gemma never reported back, and after four days, a nurse left her a voicemail telling her she’d been officially discharged.
“I wasn’t asked if I was ready,” she says. “The message invited me to call if I had any questions, which is pretty funny—asking a person with an anxiety disorder to make a phone call like that. Yes, I wanted to know how it was considered safe to discharge me without even talking to me, but I didn’t ever make that call.”
Fleur, who has spent many months in mental health wards, says hospitals aren’t places for recovery.
“You don’t get better in a ward. They’re there to contain you when you are unsafe. It’s very ‘them and us’. I’ve written into my crisis plan that I’m not to be admitted again. Now I’ve got the skills and I’m in a better space. I’m never going back there.”
Fleur has diagnoses of complex post-traumatic stress disorder and major depressive disorder, and had experienced 17 years of self-harm before she began her stay at Te Whare Mahana in 2017. She spent the better part of a year there, and has since resumed living alone and working. She’s confident in the skills she learned, and says they come quickly to mind whenever she needs them.
“They don’t fix your problems, but give you a different way of coping so you don’t go down the destructive route. I have to live with my scars for the rest of my life, but I’m not ashamed of my journey.”
Gemma isn’t sure what she gained from being in hospital, other than a determination to never go back.
“I got left alone a lot,” she says of her time in the unit. “Maybe there weren’t enough staff, I don’t know. I had a different nurse every day, and only one of these spent longer than five minutes with me.”
The public health system prefers that people get treatment in the community and at home, as it’s less expensive and involves fewer resources. This works for most patients—those who haven’t reached the point that Gemma did.
Gemma continued to suffer withdrawal symptoms for several months, but says she’s now on what feels like “something close to the right mix of medication”.
“I’m still battling for my mental health, every day, every hour,” she says. “But I’m in recovery and I’m grateful for the support I’ve had—that I continue to have.”
Charlotte, who is still living at Te Whare Mahana, says it is hard to think about the future—she spent most of her life believing she didn’t have one.
But that feeling has changed, and she wants to put her experiences to use helping others.
“I want people like me, who have experienced difficulty in life, to know that just because the first, second or third treatment didn’t work, doesn’t mean the next one won’t.”